In the two years since the beginning of the pandemic, there have been nearly 80 million COVID-19 cases in the U.S. While a majority of people infected with the virus recover and return to their daily lives in days or weeks, many suffer from “long COVID,” or PASC (post-acute sequelae of a SARS-CoV-2 infection), a chronic illness that is still not widely understood.
Long COVID typically refers to symptoms following a COVID-19 infection that last for more than four weeks, although many people suffer from symptoms for months or even years. While more data is needed to better understand the wider implications of the illness, studies estimate that long COVID may occur following 10% to 30% of all COVID-19 infections and may be responsible for at least 15% of current labor shortages.
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This is an issue that businesses and leaders cannot afford to overlook. Some long COVID patients are unable to work at all; others can work if provided with accommodations. Creating supportive policies for people with long COVID can help employers retain workers and better support chronically ill and disabled employees.
Educate yourself on long COVID. Understanding how long COVID can affect employees is the first step in supporting them. While long COVID is an umbrella term that includes a diverse array of symptoms and experiences, there are some typical symptoms that can impair people’s ability to work. These include but are not limited to fatigue, “brain fog,” tinnitus, smell and taste disorders, gastrointestinal issues, new allergies, shortness of breath, dizziness or fainting upon standing, and post-exertional symptom exacerbation — the worsening of symptoms after physical, mental, or emotional exertion.
Dr. Tenesha Wards, D.C., A.C.N., founder and medical director at Infinity Wellness Center in Austin, Texas, said she was better prepared to accommodate a new hire with long COVID because she was already familiar with the illness. “You can’t learn everyone’s disease,” she admitted. “But [you can] have an open conversation.” Wards recommends that employers talk with employees about symptoms, methods of symptom management, and how long periods of worsened health typically last.
Employers can start by learning about post-exertional symptom exacerbation, or post-exertional malaise (PEM), a common symptom of long COVID and related chronic illnesses. People with PEM often have to carefully pace work tasks with rest, because overexertion can lead to temporarily or permanently worsened health.
When Catherine Thomson returned to work as a physiotherapist after contracting COVID-19 in January 2020, she felt that there was a “mismatch” between what she was capable of and what her employer expected. After attempts at coaching clients, Thomson “crashed big-time.” She developed tachycardia, breathlessness, and extreme sensitivity to light and noise. “It took me about 12 months to get back to where I was before,” she explained.
Thomson, who is also the cofounder of a support group for physical therapists living with long COVID, explained that “episodic disability” can be confusing, so it’s important that employers learn about PEM and other symptoms that may be less widely understood.
Dr. Benjamin Abramoff, M.D., director of the University of Pennsylvania’s Post-COVID Assessment and Recovery Clinic, noted, “It’s not uncommon for returning to work to re-trigger symptoms that had been improving or resolved.”
“I think what carries us to … our recovery are the people around us,” said Ibrahim Rashid, a graduate student at the University of Chicago’s Harris School of Public Policy, who has long COVID. “The most important relationships [are] our employer and our partner.”
Create a safe environment for open communication. Disclosing information about a disability or chronic illness can be intimidating for employees, but transparent communication is crucial for employers to provide the right kind of support. Some employees may choose to disclose their illness while interviewing for a job. In these situations, it benefits both parties if the employer can offer a prompt response confirming that they have understood the employee’s disclosure and any requests for accommodations.
“It is terrifying to disclose a disability … before you have an offer,” Rashid said. Rashid’s fear is reasonable; disabled and chronically ill people face pervasive stigmas, and workplace disability discrimination persists despite legal protections. Rashid once had to wait a month to hear back from a potential employer after his disclosure, which led him to pursue other opportunities instead.
In some cases, it may be helpful for coworkers to be aware of an employee’s illness. Some employees may prefer for employers to disclose their illness to coworkers on their behalf, whereas others might prefer to speak directly to coworkers. Lesley Macniven, a human resources consultant and founding member of Long COVID Support and Long COVID Work — international support groups based in the United Kingdom — suggests that one way to provide better understanding and support on teams is to give employees who have long COVID the option to lead interactive team sessions, where open discussion is welcome, upon their return to work.
Offer remote options. Many long COVID patients find that remote work is a better option for managing symptoms than being in an office. “Working from home can allow patients to pace themselves, which can be important for individuals’ recovery,” Abramoff explained. “It also allows them to conserve energy by not having to deal with the commute, walking into the building, [or] settling into the office. That way, the energy that they do have can be devoted to work.”
Remote work may also feel safer for patients who are worried about reinfection. Research indicates that long COVID patients may be at greater risk for reinfection, and some may have been unable to get vaccinated.
“I’m so scared of getting it again,” Rashid said. He explained that working remotely has given him “peace of mind.”
Some employees with long COVID may feel comfortable returning to the office. The important thing is for employers to avoid making blanket assumptions or policies and instead defer to individual employees living with chronic illnesses about their preferred methods for mitigating risk.
Consider job flexibility and be open to change. Employees with long COVID may need to reduce their work hours or transition to new roles. Nisa Malli, a labor researcher and COVID “long-hauler” in Canada, recommends offering training and retraining programs “for those that cannot physically or cognitively do the same jobs as before.”
Flexible hours and long lead times for work deadlines and events can also be helpful. “If I’m trying to schedule meetings on Zoom that [my employee] needs to be on, I’ll try to schedule them a week out to give her time to prepare,” Wards explained. She emphasized that it was more important to find sustainable long-term solutions than to force the employee back into her original workflow. “They’ve learned to work differently and adapt,” she said. “[If] you believe in them … give them that grace to heal.”
Reevaluate benefits and paid leave policies. According to the Society for Human Resource Management (SHRM), the pandemic has prompted many companies to expand their benefit programs in order to better support employee mental health and well-being. In a survey of 2,504 HR professionals across the U.S., SHRM found that 78% of employers “developed benefit packages specific to the more socially distanced workplaces.” There’s a growing recognition by companies that employees need more diverse benefits when it comes to offerings like telemedicine, family caregiving, and mental health. At a time when companies are thinking more expansively about the needs of employees, those living with chronic illnesses should not be left out.
Employers should consider expanding benefit packages to include part-time employees, stipends for specialists, and partnerships with holistic health centers. They should also be prepared to offer extended leaves of absence and rethink traditional leave restrictions that may be more difficult for people with complex chronic illnesses. Most companies’ current leave policies require extensive documentation, which may be a roadblock for people with long COVID, because they often face doubt from clinicians and are sometimes unable to provide proof of infection. In addition, sick leave policies that allow for only a certain number of “episodes” are less likely to be useful to long COVID patients than policies that renew.
Invest in peer-mentorship programs. While some of the issues long COVID patients face are unique to the current pandemic, many are shared across the disabled and chronically ill populations. “Creating a workplace culture that is supportive for long-haulers means creating a workplace culture that is supportive for workers with disabilities [and] chronic and episodic illnesses,” explained Malli.
Employers should consider funding peer mentorship programs and workplace support groups for chronically ill or disabled employees. When Rashid was first grappling with his return to work, he connected with another disabled employee at his company via LinkedIn. “Every week, we would meet and talk about how to navigate being disabled,” Rashid said. “Having a peer mentor made me feel comfortable.”
Encourage collaborative work systems. A collaborative workplace environment can make it easier for chronically ill employees to communicate their needs. “If you have a company culture where people say, ‘How are you?’ and mean it … it’s so much easier to get help,” explained Macniven.
Collaboration also allows for systems that can better account for unexpected absences. Carrie Jones, founder and principal at JPA Health, a midsize marketing firm in Washington, D.C., has found that shared documents and email distribution lists make it easier to meet deadlines when her employee with long COVID is unavailable. “When a client sends an email, multiple people get it, and we can triage so it’s not sitting on one person … when they need to be spending time taking care of themselves,” Jones explained.
Wards records Zoom meetings and creates collaborative checklists so that absent employees can easily catch up and don’t have to rely on memory, which can be difficult for people experiencing cognitive symptoms. Both Wards and Jones recommend making backup plans and remaining as flexible as possible.
“We have to be … nimble in accommodating the needs of people who serve our business,” Jones explained. “Otherwise, it’s not only bad for them, it’s bad for our business.”